OUR JOURNEYS

Patient story

Robert Ngo

“You have pulmonary hypertension.” the cardiologist said.

“Viagra, three times a day!” I exclaimed and chuckled as a pharmacist intern.

August 30, 2006

In retrospect, I had dyspnea on exertion since I was a little brat, but never thought much of it. Every morning during elementary school, I had to run three blocks to get on school grounds because of the stray hungry dogs and the thugs hanging out in the alleys of South Central Los Angeles. I always got on campus ground out of breath, but that was due to my light speed run, which I believed at that time. Everyday, I anxiously anticipated for recess and lunch where I was the first to pound the handball, swing at the tetherball, hit the sock-ball, kick the kickball, pass the football, dribble the basketball, and block the soccer ball. However, the majority of the time I played hopscotch, because the kids did not want a player that “sucks”; I got tired easily. I go…

In Junior High, my participation in sports was limited because there were three deaths in my family that occurred during each of the three years I was in school. My closest cousin died slowly when I was in the seventh grade. My grandma died slowly when I was in the eighth grade. My father’s life was taken away one dark night when three miscreants came into our store and demanded money. I go…

Los Angeles High School was a rough place to be. Daily fights were a ritual. Fortunately, I did not get into many brawls since Asians are stereotypically known for Bruce Lee’s kung-fu fighting. Due to unforeseen events, my mom and her 9 married brothers and sisters banded together and moved west at the end of my first year in L.A. high school. I go…

My first year in West Covina High School was tough because of the new environment I was in and the reputation I had set for myself the first week. I joined the cross country team, but quit after running half a lap. Chastised and humiliated for weeks, I decided to prove my peers wrong; no I did not try out for the cross country team again. From that day on, I never started anything without finishing it. I tried out for the swim team, even though I had never been in water more than ankle deep. Coach Edward was a male figure I looked up too. Coach Edward demanded nothing but effort and dedication. His swim or drown technique revealed my character. The whole season did not look promising for me, but I kept flapping my arms and kicking my legs to avoid drowning; voted the “Most Improved Swimmer” my first year. I continued my Speedo passion in water polo as the goalie, since I was not able to move constantly in the pool; voted the “Coaches Award” my second year. Then came wrestling. Wrestling was one of the greatest challenges for me in high school. My athletic peers saw my limitations in the pool and they had doubts. The wrestling team saw my old man run and many were betting that I will not finish the season; voted the “Varsity Scholar Athlete” my last year in school. Each year during my tenure in high school, I had a physical from my primary care physician. Each year I complained about shortness of breath and dyspnea on exertion, each year I was prescribed an Albuterol inhaler. I go…

Undergrad was the time I will never forget. Gymnastics, scuba diving, paint balling, hiking and mountain biking with marked limitation, but I never thought anything of it. One day, I saw a poster with Uncle Sam’s pointing finger and a caption stating: “We want you!” So I enrolled in the Army Reserve Officer’s Training Corp. I go…

I was stationed at Fort Knox, Kentucky for my basic training in the summer before September 11, 2001. I was one fired-up army cadet who was always up to speed. I was drilled daily by the army non commission officers (NCO) and officers. The NCOs said I was “trouble” since I came from California and I came in with a smile on my face. “Wipe that smile off your face boy!” is what I heard throughout training. Boy, soooo many push ups and punishment drills at the grassy knoll. “My great grandpa can walk faster than you can run!” said one NCO. Later, I found myself on the pavement with a 1 inch laceration above my right eyebrow. The army doctor performed an ECG/EKG on me. Something was not right. I was placed on limited duty and sat in sick hall for one week, while my platoon went through intense training. I knew bad news was coming when an army officer came in the door with a set of papers in his hand. Tears started to flood my eyes as the officer gave me a discharge interview. I refused and begged the officer to let me finish training because I could not come back home as a “quitter”. I was sent home. I go…

I received another consult from a cardiologist at home. ECG/EKG showed positive findings, but the ECHO was a good study. I personally handed the results to my commander and I was rushed back to Fort Knox. I was placed in another company due to the training I missed. The one week I was back, news about my return traveled to my previous platoon and drill sergeants. “I admire your courage and intestinal fortitude. You will do good one day.” exclaimed my previous drill sergeant, followed by a salute. I did not know I had much of an impact on my previous Charlie Company. Basic camp graduation day, I was offered $17,000 army scholarship provided that I pass the run test. I tried…I tried…and I tried for 6 months…but I succumbed to failure. I go…

Something was not right. I was supposedly in the best shape of my life, but my salty French fries and cheeseburger eating friend could out do me in all of our outdoor adventures. I got a third consult from another cardiologist. ECG/EKG was positive for abnormalities. The ECHO was negative…but I insisted for more testing. Stress test and a nuclear scan were performed, but negative as well. “There is nothing wrong with you.” the cardiologist said. So I continued my outdoor exploration all the way through pharmacy school. I go…

A spot in the pharmacy class was very competitive. Three times was the magic number for my admittance to Western University of Health Sciences College of Pharmacy. I met lots of strangers my first year. I studied with many classmates the second year. I found a few good friends my third year. I know who I can count on my fourth year. I go…

My daily physical activities were noticeably limited throughout pharmacy school. On August 30, 2006 my preceptor, Dr. Chow, was one of the people responsible in my diagnosis at the Cardiology/Medicine pharmacy rotation. “You have pulmonary hypertension.” the cardiologist said. “Viagra, three times a day!” I exclaimed and chuckled as a pharmacist intern. I go…

Throughout the 25 years of my life, I have lived a life with uncommon adversities that might have created a life with many different accomplishments. I thank those in my circle of influence for the directions and support. Now it is my turn to return the favor. If a story like mine was not told ten years ago, then a race for a cure would not have begun. Gail Boyer Hayes, PHA Board member put it nicely, “If a village is needed to raise a child, then the whole world is needed to cure pulmonary hypertension.”

PAH prognosis back then, gives us 5 years to live… Now, there are ongoing research and treatments that increase survival.

PAH is a rare disease affecting 1 to 2 out of a million people in the general population. We have more than 6000 members and 180 support groups.

PAH is often misdiagnosed and is usually caught when the disease progress. We are increasing awareness.

PAH is a rare disease and there is little support or funding. We have the 435 Campaign.

PAH is a disease that will question our lungs and our heart… Will you? The PH community will not.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.